Month: November 2017

My wife and I went to Halls Chophouse last night to enjoy some high-quality steak since I’m unsure if I’ll be able to stomach it after the surgery. (See what I did there?). It was amazing as usual.

I can’t believe it’s 53 days until surgery. It’s approaching very quickly. I’m trying to prepare mentally and spiritually while enjoying food as much as I can. I have come to realize I need to continue to exercise up until the surgery date as I feel gross when I don’t. So – I ran 2 miles today. Felt fine.

I have an endoscopy next week. Should be interesting. I’m sure the report will be negative as that is what they expect with HDGC patients. It would be very bad news if it wasn’t negative.

I’m finally caught up on here, so the days I write should be the days I post. I hope I can keep it going.

Whoa. I went to a Halloween party at our neighbors’ house on Saturday night and ate so much I nearly became sick. I have been enjoying food these last few days, but perhaps I’m overdoing it. I might have to calm down a bit.

I keep telling my wife and friends I’m on the “Stomach Farewell Tour”. 68 days left

I finally got my blog/website up (you obviously know this), but I have been keeping my thoughts and updates via a notebook. As I listed in my “About Me”, the purpose for this blog is to document this journey and hopefully provide useful information to others as they might have to go through this or support family members who are doing through this. So – Stay tuned and I’ll keep it brief and informative. 😃

It’s been Five days since my last workout (Ironman 70.3) and I’m already feeling gross from eating way too much and not being active. I’ll try a work out later today.

72 days left

I met with my Boss and his Boss and they were both extremely understanding and encouraging when I told them about HDGC and the upcoming surgery. It appears my work is amazing about these types of things. It was a unique conversation. I’m like, “Hey – they think I might have cancer, but they can’t tell, so instead, they want to remove my stomach so they know for sure”….. However, like I said, my company has been amazing about it.

My Endoscopy is scheduled for 11/22/2017.

My mom’s Endoscopy and Biopsies came back “clear”, however they said they noticed an irritation on her stomach which is most likely caused by stress? :\. That makes me a bit nervous. She is working to schedule a surgery date after the holidays. She has identified a good doctor in St. Louis (information below). I’m extremely thankful for NoStomachForCancer.org as they helped my mom and I find doctors/surgeons with experience in HDGC/CDH1 Gene mutation patients. Here is a note from Dr. Fields:

“We have an active program in prophylactic gastrectomy for CDH1 patients. I would be happy to see her and discuss and I have performed many of these surgeries. Also, we see many patients from Springfield and can assist with logistics of travel and pre/post-op care.

If you want to discuss with her and let me know if she wants to come up here. We will then contact her and her current providers to review records so we can get any additional testing done here when she sees me to minimize visits.”

We have a rough draft of who is staying with us in the hospital/hotel for recovery, and who will be keeping the kiddos. We have great support from family and friends. Also, work has been a huge blessing as I’m able to take short-term disability for the 6-8 weeks (hopefully) of recovery. Getting the endoscopy scheduled around the holidays has been a challenge. Still working on that. Some places are booked two months out. It’s crazy.

Ironman 70.3 Wilmington 10/21/2017:

The Ironman 70.3 in Wilmington NC was absolutely amazing. It was a tough race, but an incredible experience. I had been training for most of the year and it all ended with a 1.2 mile swim, 56 mile bike ride, and 13.1 mile run. My time was 5 hours and 37 minutes. I was 52 out of 100 in my age group. Certainly nothing incredible from a time standpoint, but I was very happy to enjoy the race and complete it without issues. The weather was amazing, the crowd and volunteers were perfect. The Ironman brand knows how to put on a great race. It will not be my last, but it will be my last with a stomach.

My wife and I feel there are not enough hours in the day to talk through the amount of logistics and details for the upcoming surgery (1/6/2018). We have three lovely kids (ages 7, 5, and 2). They take after their daddy (me, duh) in many ways. Two ways they are like me: (1) awful dad jokes (I mean amazing dad jokes) and (2) super high energy.

Logistics:

Hotel for 2 weeks(ish)

Flights to NYC

Who is staying with my wife in the hotel (my recovery room is a shared room and doesn’t allow overnight visitors)

Who will be keeping my lovely three children for two weeks? (This is probably the biggest challenge).

Will they have cable so I can watch the Chiefs play? (Jk, but seriously..)

Thus – when the kids are awake, my wife and I can’t really talk about serious life issues like removing an organ so I don’t get cancer. Those conversations have to come at 8:00 pm when the kids are asleep. But then – we are so tired from our day. (She homeschools and I work a technology/software sales job). We make it happen though. It’s hard, and every night we feel like we are overwhelmed. I keep reminding us both, let’s make small steps every day. 79 days left.. oh boy.

Life and circumstances are changing quickly. Since last week, we spoke to arguably the best surgeon who specialized with HDGC (Sam Yoon from Sloan Kettering in NYC). Thankfully, the hospital is in-network so I was able to book an appointment directly with his office. Thus, I have an appointment for a prophylactic total gastrectomy for Jan 6th, 2018. That’s 80 days away. Which doesn’t seem very far from now. I have to get an upper endoscopy in November and I’m praying the results are negative and Dr. Yoon can proceed as planned.

I felt really good after speaking with Dr. Yoon. As of last week, he has conducted 51 HDGC prophylactic total gastrectomies and countless TG’s from cancer patients. His results are very good and his name is referenced in nearly every HDGC documentation/medical guidelines I have reviewed.

People keep asking me, “how are you doing”? However, I’m struggling to find emotions for this whole thing. I’m more in reaction mode as I feel I don’t have a choice other than to have my stomach removed. Thus, I have to take steps in the right direction. I literally can’t imagine how I’m going to feel when I get in NYC and lay on the operation table. I have anxiety just thinking about it.

I also didn’t understand how expensive this whole thing will be. Airfare and hotel alone will be more than $3,500. It will also max out my deductible ($10,000) and who knows what else. Again, I don’t have a choice.

On a different note, I’m competing in my first Ironman 70.3 event this weekend in Wilmington NC. It should be awesome and I’m sure I’ll have to push through some uncomfortable feelings to finish the race with a respectable time. (1.2M swim, 56M bike, 13.1M run). I’m going up with several friends from church.

Thanks for reading. This is going to be an interesting next few months.

The meeting with the Surgical Oncologist at MUSC went well. It was sobering and he was blunt, which I appreciated. He concurred with the medical guidelines and recommends I have a prophylactic total gastrectomy. I never heard of those three words together before just a few weeks ago. He also said, “if you don’t have this surgery I believe there is a 100% chance you will get stomach cancer”. That was a moment my wife and I had not prepared for. This whole thing seems like a bad dream. But – it’s real life and we have to figure out what to do.

He said he would be happy to do the surgery and felt confident, although, he has never done a procedure like I need, and he only treats cancer patients. It highlights the fact that HDGC is so rare. It’s good to know we can stay in town if needed, but I’m nervous that he doesn’t have the experience I desire. I’m going to speak with Karen at nostomachforcancer.org (NSFC).

One of the good things about the meeting was it helped my wife and I get on the same page. It was hard going to the cancer center and seeing all the cancer patients. It was hard because you can see on their face the difficult road they have been down, and have yet to finish. However, at the same time, it was a blessing seeing their fight and their caregivers serving so selflessly. I need to toughen up really quick.

I’m meeting with a surgical oncologist on Wednesday which was the “next step” after finding out I have HDGC. Between being sore from the race and thinking about my upcoming appointment Wednesday, I couldn’t sleep last night. I rarely have sleeping issues. Matter of fact, I can sleep almost anywhere. Something has to be really bugging me for me to lose sleep.

I’m excited about today, however, because I have a call today with the founder of No Stomach For Cancer. I’m excited to hear her feedback. She wants to give me tips and information about things I should know before my appointment tomorrow. I feel at peace speaking with people who have done this before. She went down this road 10 years ago and created No Stomach For Cancer because there was such little information and help during her diagnosis. Thank God for her. I can’t imagine figuring this out without nostomachforcancer.org.

I’m starting to accept the fact that I’m going to have to get my stomach removed. It still sounds crazy to me. It also sounds crazy to people when I tell them what’s going on. They say things like, “Can’t you just live a healthy lifestyle?”. I wish it were that easy. According to the publications, I have been reading, my gene mutation has created a situation that a healthy lifestyle cannot prevent. I’m trying to figure out how to educate those around me without being too much of a nerd. I also know that this is a tough topic and difficult to understand.

I just finished an Olympic distance triathlon at Kiawah Island, SC. My time was about 9 min slower than my goal but the waters (ocean swim) were super rough which made the swim very hard for me (motion sickness). The bike part was great and I improved from last year. The run was brutal as the heat was 90ish degrees with 95% humidity. So, the heat index was 101. I just couldn’t run fast without feeling like I was going to pass out.

Last week was bizarre. That is the only way I know how to explain it. I felt a strange peace about the genetic testing so when the Genetic Counselor (GC) told me I tested positive for CDH1 Gene Mutation, I didn’t know what to say. I also had been telling my wife, Melissa, to not read up on CDH1 Gene Mutation as the information out there was scary and we didn’t need to rush into knowing anything until we found out if I was positive/negative. I thought that was a good plan, but maybe not. Now she is playing catch up but seems to be in great spirits.

We have an appointment with the surgical oncologist on Wednesday, which I’m happy I didn’t have to wait long. I did learn through a connection that he does have at least one experience with HDGC and CDH1 Gene Mutation. That is important as I start this journey because HDGC is not common so I want to get advice from those who have seen it the most.

If you want to learn more about HDGC and my CDH1 Gene Mutation, you can learn more at the page called “Learn about HDGC” at the top right of this website.